New Immune System, New Me
I’m not really sure where to start. See, this is a cliché start already. (Full disclosure: just Googled “e with an accent” and copy and pasted it) Maybe I should take this to Buzzfeed and write a listicle. 10 Things I’ve Been Meaning To Write About But Haven’t Because I Have No Motivation. I’ve been thinking about writing for months and to share what’s been going on with me, but what’s going on with me has made it hard for me to write. I think that’s what a catch 22 is. Something like that.
Anyway, I recently made a post on Instagram about being sick and getting chemo which I also shared on my Tumblr. It wasn’t long and it wasn’t detailed, but I got a few messages from strangers and friends alike that they were inspired by my story. I’ve been told not to sell myself short, but I don’t feel that my story is that inspiring compared to what other people I know are going through and have gone through. But, I’ll come back to this.
In 2007, I was diagnosed with systemic-onset juvenile idiopathic arthritis (SoJIA). I’ve dealt with this chronic illness for most of my life. High fevers, swollen joints, and an itchy red rash are the three main symptoms of this autoimmune disorder. Some days I was okay and some days I couldn’t walk because my ankles and knees were so swollen, or I couldn’t button my jeans because of swelling in my fingers. Needless to say, it wasn’t a fun way to grow up. There is no fun way to grow up with a chronic illness. There is no fun way to live with a chronic illness, physical and mental alike. But, I managed. I’m still managing.
Fast forward to March 2014 to my hospitalization. I struck an outrageously high fever of almost 105. I don’t really remember much from this hospitalization because I was so sick. After a lot of research by a team of doctors, I was diagnosed with macrophage activation syndrome (MAS). This is a rare complication of rheumatic diseases including SoJIA. It happens in about 10% of cases and it can be fatal. Lucky me, I’m the 10%! I was hospitalized 3 more times for MAS flare-ups over the next year. It sucked. I couldn’t keep living like that. My family and I began to look further into treatment options. The doctors told us MAS is very similar to Hemophagocytic Lymphohistiocytosis (HLH). Another long, scary-sounding illness to add to my impressive resumé. (Because of my weakened immune system, I also managed to contract shingles and mono in 2014). Now, treating my illness as HLH, it was off to see the oncologist. The oncologist said I needed a bone marrow transplant to replace my immune system with someone else’s. This treatment would include chemotherapy, a 5 week stay in the hospital, and a 100 day recovery period that I’m currently half-way through.
It didn’t feel real. I feel like a lot of people say that when they get a life-changing diagnosis or find out they need a serious operation, but I guess that’s because it truly doesn’t feel real. I was going to undergo chemotherapy to wipe out my old, crappy immune system and live in a hospital for 5 weeks. Then, I’d have to recover while my new immune system made itself at home in my body for 100 days post-transplant.
Chemo was rough. That’s probably an understatement. I don’t fully remember it. I’m not sure if that’s some sort of repression of my memory or all the drugs I was on, but I was told I was in pretty bad shape. I lost my hair. My eyebrows and naturally long luscious eyelashes stayed intact so that’s pretty cool. The bone marrow transplant itself was not what I imagined. It was not an operation, but an IV infusion that took place over 9 hours. I remember eating a semi-decent egg sandwich that morning and sleeping a lot. Chemo was much worse than the transplant itself. I had to undergo the treatments for two weeks. I consider myself pretty lucky for that. I know so many other people who have had or have cancer and had to undergo chemo for so much longer. How can I complain (and I do) when other people have cancer and are receiving bone marrow transplants, chemo, radiation, surgeries, etc.? My mind is constantly battling itself with thoughts like “Be thankful you’re being cured and not just treated. This will all be over in time,” and “My life sucks. Why me? Life isn’t fair and I wish I wasn’t bald.”
Well, here are some things I’m learning. It’s okay to be angry and upset because life isn’t fair and it isn’t fair for anyone. Everyone has their own problems and that doesn’t make yours any less valid. Sometimes I’m so angry when people complain that they have too much homework or that they don’t feel like going to work. But who am I to rank the seriousness of a problem when people have it worse than I do, even if sometimes it doesn’t feel like it? All of this is to say there’s no comparing problems. I mean, yeah, some stuff is worse than other stuff. Yes, you can quote me on that. “Some stuff is worse than other stuff”- Jaclyn “Very Articulate” Weisser. If you want to cry and scream about life then go for it. I do all the time! We’re all riding the struggle bus together.
A lot of people call me brave. A lot of people have also told me I have a perfectly round head, but that’s beside the point. I don’t always feel very brave. I feel like I am just doing what I’m told, going through the motions, taking my medicine, seeing my doctors, and doing what I’m supposed to do to get better. But I’ve been sick for almost 10 years. My entire life has been pain and doctors and medicine and needles and hospitals so I guess I am kind of brave for trudging through all that. And now, it’s all almost over. With the help of my loving friends and family, especially my dad who left his job to take care of me and get me a Slurpee every day, I am getting through this. It’s not easy and some days I spend wondering “why did all this happen to me?” I guess what doesn’t kill you makes you stronger. (Note: I’ve come full circle with my clichés.)
I hope my story can reach at least one person who is going through something similar and give them a little comfort in knowing they’re not alone. Chronic illness is the worst, but you are not alone.
